"Severe Osteoporosis" diagnosis. Now significant improvement.
Posted , 13 users are following.
Four and a half years ago I got this diagnosis (age 62) out of the blue. I had no symptoms, no fractures, and the GP had suggested a Dexa scan. All of a sudden I changed from a person who was really active, (even used to rollerblade!) to one who felt fearful and delicate.
I read about people who fractured turning over in bed, sneezed, or were the recipient of a 'bear hug'. Awful stuff.
I sought out a good Rheumatologist and found one who had trained in Harvard and practiced quite close. After ordering a batch of tests, I attended for a review. She said that no specific cause was found but perhaps my acknowledged pretty 'woeful diet" in the past (I'm vegetarian and my protein intake was really poor) was relevant.
She straight away prescribed Forteo and said there was no other medication that would come close to being as effective as this as my spinal T-score of -4.5 placed me at a very high risk of fracturing. So I consented.
Two years later I finished Forteo and was then prescribed Actonel " to consolidate any gains I had made" and to continue the protection of an anti-fracture medication
I had no troublesome side- effects from either medication.
Last week (four and a half years later, I had a further Dexa scan. My T-score had reduced to -3.7 and I have had no fractures. This represents a significant 17.7% improvement in my bone density. A few weeks ago while clipping the hedge, I stupidly over- reached and toppled off a 5-step ladder on to the grass. Thankfully I was unhurt, nothing broke. . . .
Briefly, what ELSE was I doing to help myself?
*** Exercise - I'm not great on exercise, though I'm pretty active. I walk the dog each day for max. 30 mins. with a lot of stopping and starting for pee breaks!
Once a week I attend an Osteo Pilates class with an OP physio and then for 10 mins. each day I practice 3 or 4 of these exercises at home.
*** Diet - A lot better than in the past, plenty of cheese, milk and yoghurt. Not a lot of 'greens' as I have IBS and they can set it off.
*** Medication - Was on a reducing dose of Prednisone for another condition, now stopped.
Forteo, now stopped, and Actonel continues.
Vitamin D, and calcium supplements if needed.
*** Supplements - Multivitamin only.
The Rheumatologist last week was really pleased with such an improvement and advised me to continue with the Actonel for another 3 years when I have another scan and full review.
My message to others -
My conclusion from all this: MEDICATION WORKS! I truly believe that my own paltry efforts and my Pilates sessions contributed maybe 5% of this improvement, no more.
I completed the FRAX risk of fracture tool and keyed in my scores before starting medication and then the most recent result:
After diagnosis, my risk of 'major osteoporotic fracture' in the next 10 years was 54%( with a T-score of -4.5).
Last week, my 'risk of major fracture' in the next 10 years was 22% (with a T-score of -3.7).
I am well aware that my bones are still in poor shape but I'm confident that I'm doing the very best for my condition and managing pretty well.
Juno
4 likes, 60 replies
june17452 Juno-Irl-Dub
Posted
Hi Juno
My T score is -3.2 on my spine. I have so far refused meds from my Dr as I have reflux problems and don't believe the evidence presented is worth the possible side effects. I too am vegetarian bordering on vegan but feel I get sufficient protein from my diet.. Recently I have been suffering with back pain especially after rising from a chair and am panicking . This is probably due to my grand childrens visit and the temptation to pick them up which I know I shouldn't do. In an effort to avoid medication, I found an ad for Algecal. I wondered if you had heard of it, the reviews claim to have increased bone density.
June Yorks
Juno-Irl-Dub june17452
Posted
Hi June, Have you discussed with your Doc. your very real worries about taking the common oral meds. for OP as 'reflux problems' are the most common reason why the oral meds. are unsuitable for patient's with this? Anyway, there are other meds. available if it's deemed that you really need them.
Also, have you been seeing your normal doctor or a rheumatologist or endocrinologist?
Other relevant questions: Do you have a close relative with OP? Have you had any fractures in the past?
Did your doctor explore the CAUSE off your OP and discuss this with you or did he go straight to talking about meds.? Hopefully not!
However, the thing that most jumps out of your post is your mention of back pain - which, of course, can have many causes and be of no concern - but it might need to be checked out esp. as it's really worrying you now.
I remember being told not to lift any child over 2 years and to get down on the floor and play with small children rather than lift them up to me. Works fine.
If I were you June, I'd start with another chat with the doc., bring along all your questions (none is too stupid, he/she has heard them all before!) and preferably a friend or relative also - they tend to remember more than you will. Then tell him/her that you'll think it all over and return in a couple of weeks.
Next, I'd look up and note the name of a physiotherapist who works with OP patients. Regardless of whether you take meds.or not, you really do need to be more aware of how to protect your spine, really simple things like not bending forward (like touching your toes), not twisting your spine suddenly, not lifting heavy objects etc. - all stuff you really shouldn't be doing anyway, even if you had a regular 'bad back' . . . . It's amazing what you'll learn in even one session with a physio. THEN you can start checking out various information on the net. The NOF has a great set of small videos called " Too Fit to Fracture" so check out these. There's LOADS of information online but re. exercise try and pick something you'd LIKE to do, otherwise it could become a pain in more ways than one!!
Finally, please don't panic, you have lots of time to decide what's best for you and it can be quite an interesting condition to research. This is a great forum (though some of us have been known to have, as the politicians put it, " frank and vigorous exchanges of views"!!). Do keep in touch and let us know how you're doing.
Kind Regards, Juno
PS. I know nothing about Algecal but I'm sure someone else will be along to help here.
Mollysuki june17452
Posted
Juno has given you lots of good advice. And more importantly unbiased advice. I only wish I’d found this site long before my 7 spinal fractures. Who knows I could be in a ‘better’ place. It can be overwhelming at first but you’ll know what’s right for you once you get the answers to the questions. Good luck and best wishes 😌
lynne73895 june17452
Posted
Hi June. Hope you don't mind me making a comment about protein.
I was a strict vegetarian for 40 plus years until I started breaking bones. I then started weighing my food to work out the nutrient content and was surprised to find that both my protein and fat intake were well below the RDAs. .
I don't think its just about the quantity of protein, but also the quality of the protein that matters. Animal protein contains more of the essential amino acids which are needed for the health and maintenance of both muscle and the collagen protein, bone matrix. This is what gives bone their strength and flexibility.
When I was first diagnosed after breaking both wrists, I got bogged down looking different at Ca supplements for bone health, unaware that protein was just as important. The following link is about the importance of protein for bones. He suggests 1.2g per KG of body weight. Hope it will open!
http://blogs.creighton.edu/heaney/2014/07/25/the-paradox-of-osteoporosis-irreversibility-2/
Because we only need a total of 1000 to 1200 mg of Ca a day.I gradually increased my dairy intake, especially full fat yogurt, which is a good source of available Ca. I eat a 150 g portion of St. Helen's Farm Goat yogurt a day, for its 360 mg of Ca. I also gradually added free range eggs, occasional free range chicken and tinned Alaskan Wild Red Salmon, which is rich in protein, Ca and omega 3, if you include the bones and liquid. The only other meat I occasionally eat now is UK lamb.
I looked at the Algaecal adverts a few years ago, but decided that I didn't want a combined Ca supplement from any where, as I usually manage to get sufficient Ca from my diet. I prefer to buy separate main bone supplements, especially Mg glycinate, D3, K2 mk7 / mk4 and boron, as it gives me more control over how much I take of each one.
There was also concern at the time over the lead content in Algaecal. The state of pollution in some of our oceans, I feel is worth considering, before I buy minerals from this source.
At the end of the day, its our money we are spending, so we buy what we think is best for us as individuals.
Best wishes
kathleen65757 june17452
Posted
june17452 lynne73895
Posted
I agree think I will give Algecal a miss! You are all so helpful so glad I found this site x
june17452 kathleen65757
Posted
Thank you for your reply, I have done my stretches this morning, first day I have found time and must admit my back does feel more comfortable. My little grandson is just so adorable I find it very difficult not picking him up when he asks for a cuddle. Forgot to mention my daughter is a Physio and she gives me strict instructions not to bend forward and especially not to pick up the children! I need to do as I am told!
Kind regards June
june17452 Juno-Irl-Dub
Posted
Hi Juno,
Thank you so much for your informative reply. This site is so helpful and supportive. Forgot to mention my daughter is a Physio, she gets very cross with me when she see what I get up to. I am fairly fit and have just passed my National Pool Lifeguard Qualification at age 65 which I am very proud of. I realise swimming is not weight bearing so does not help increase my bone density but my other activities like dog walking and cycling should plus I have hand weights which I use at home most days. I am a bit of a rebel I'm afraid, hate taking meds. I have learnt my lessons however after having the grand children for 4 days that I will suffer if I dont stick to the rule of not bending forward and certainly not picking up small cute children, even when they ask for a cuddle when we are walking and they are tired! I have just been in touch with my dr and have an appointment with a rhuematologist so it a start towards conforming...... maybe!
Kindest regards June
Anhaga june17452
Posted
It may encourage you to know that even if swimming per se doesn't really help with bone density, the fact is it strengthens your muscles and the resulting increased pull on the bones does have a small effect on the bones, so indirectly it is improving your bone density!
Juno-Irl-Dub june17452
Posted
Hi June, Gosh, I'm very impressed with your physical prowess!!! Anhaga is right in her comments on swimming and muscles but I also think that you just FEEL a lot better after a swim than after some arduous floor or weight exercises !! I know they're better for you but. . . . .
Finally, you're off to a great start with a physio for a daughter. Wow, you'll save a fortune!!
I attend an Osteoporosis Pilates class once a week for an hour with 7 others and then try and practice for about 10 minutes on other days. I hate doing floor exercises, find them mind-numbingly boring but I really do feel they're doing me good so I struggle on.
Keep in touch and let us know how you're getting on. J
june17452 Juno-Irl-Dub
Posted
Could ask , if you are in Dublin ?
June
Juno-Irl-Dub june17452
Posted
june17452 Juno-Irl-Dub
Posted
kathleen65757 june17452
Posted
My cold has turned into something awful. I am coughing so much I am worried about hurting mt ribs or back.
Juno-Irl-Dub june17452
Posted
Hi, Just for clarity, it's Stillorgan, not 'Still Organ' - the latter sounds a little, eh, peculiar !!! J
june17452 Juno-Irl-Dub
Posted
Ha yes , could have been worse 'big' J